Moral deliberaion in palliaive sedaion focusing on
an oncology palliaive care team
Melisse Eich 1, Marta Inez Machado Verdi 2, Pedro Paulo Scremin Marins 3
Abstract
The aim of this study was to understand how a palliaive care team seeks soluions for ethical conlicts re
-lated to deep palliaive sedaion in everyday care and whether the discussions and the decisions that are made within the mulidisciplinary team involve the sick person and his family. This is a descripive exploratory qualitaive study, based on dialecical hermeneuics. The research subjects were ten professionals on the
health team of a hospital’s Oncology Palliaive Care department. The results indicate that a humanisic ai
-tude assumes, among many things, the prudent use of palliaive sedaion as an available resource to minimize sufering during the process of dying. The pracice of palliaive sedaion requires a thorough analysis of the
clinical facts, ethical relecion by the mulidisciplinary team, as well as respect for the values of the sick per
-son and their family and their paricipaion, which would result in a process of moral deliberaion.
Keywords: Deep sedaion. Palliaive care. Bioethics. Decision making.
Resumo
Deliberação moral em sedação paliaiva para uma equipe de cuidados paliaivos oncológicos
O objeivo deste estudo foi compreender como uma equipe de cuidados paliaivos busca soluções para os conlitos éicos relacionados à sedação paliaiva, no coidiano assistencial, e se as discussões e decisões são feitas e deliberadas em equipe muliproissional, envolvendo também o sujeito doente e sua família. Trata-se de pesquisa exploratório-descriiva de abordagem qualitaiva, com base analíica na hermenêuica dialéica.
Os paricipantes da pesquisa foram 10 proissionais que integram a equipe de saúde de um setor hospita
-lar de cuidados paliaivos oncológicos. Os resultados indicam que uma assistência humanizada pressupõe, entre tantos aspectos, o uso prudente da sedação paliaiva como recurso disponível para a minimização do sofrimento no processo de morrer. A práica da sedação paliaiva requer análise minuciosa dos fatos clínicos, relexão éica em equipe muliproissional, assim como paricipação e respeito aos valores da pessoa doente e seus familiares, o que propiciaria um processo de deliberação moral.
Palavras-chave: Sedação profunda. Cuidados paliaivos. Bioéica. Tomada de decisões.
Resumen
Deliberación moral en sedación paliaiva desinada a un equipo de cuidados paliaivos oncológicos
El objeivo de este estudio fue comprender cómo un equipo de cuidados paliaivos busca soluciones en la coidianeidad de la asistencia para los conlictos éicos relacionados a la sedación paliaiva y si las discusiones
y decisiones son tomadas y deliberadas en el ámbito del equipo muliprofesional, englobando al sujeto en
-fermo y a su familia. Se trata de una invesigación exploratoria-descripiva de abordaje cualitaivo, con base analíica en la hermenéuica dialécica. Los sujetos de invesigación fueron diez profesionales que integran el equipo de salud de un sector hospitalario de cuidados paliaivos oncológicos. Los resultados indican que una asistencia humanizada presupone, entre muchos otros aspectos, el uso prudente de la sedación paliaiva, como un recurso disponible para la minimización del sufrimiento en el proceso de morir. La prácica de la
sedación paliaiva requiere de un análisis minucioso de los factores clínicos, la relexión éica en equipo muli
-profesional, así como también de la paricipación y el respeto a los valores de la persona enferma y los de sus familiares; lo cual daría lugar a un proceso de deliberación moral.
Palabras-clave: Sedación profunda. Cuidados paliaivos. Bioéica. Toma de decisiones.
Aprovação CEPSH/UFSC Parecer 550.595 e CEPSH/Insituição Hospitalar Parecer 642.272
1.Mestre[email protected] 2.Doutora[email protected] 3.Mestre[email protected] – Universidade Federal de Santa Catarina, Florianópolis/SC, Brasil.
Correspondência
Melisse Eich – Rua Abel Álvares Cabral Júnior, nº 444, apt. 101, bloco A, Ingleses CEP 88058-580. Florianópolis/SC, Brasil. Declaram não haver conlito de interesse.
R
e
s
e
a
r
c
h
a
r
t
ic
The pracice of palliaive sedaion to assist
people in advanced stages of oncological disease and terminal stages of life, the essence of which is responsible care, should start from the assumpion that the process of dying and death itself comprises
the most undeniable reality of humankind. So, to die with dignity, properly assisted, is as important as receiving the necessary care to maintain health and coninue the always inite and temporary journey 1.
In fact, palliaive care is deined by the World Health Organizaion (WHO) as an approach that improves
the quality of life of paients and their families fac
-ing the problems associated with life-threaten-ing
illness, through the prevenion and relief of sufer
-ing by means of early ideniicaion and impeccable
assessment and treatment of pain and other prob
-lems, physical, psychosocial and spiritual 2.
The need to seek soluions to cacothanasia,
and thereby prevent many diseases that lead to the
premature conclusion of the life cycle by nursing condiions, afecivity, and mental states that can inevitably cause a painful death and extreme an -guish 3, requires due consideraion by contemporary
society. Furthermore, in the face of the diiculty in controlling the progress of diseases such as cancer, it is essenial to transform the condiions of health
assistance for people at the end of their lives, in or
-der to minimize sufering before death. This assumes not only more equitable and universal palliaive care as a human right, but also the development of a way of providing individualized care, based on ethical consideraions that are able to raise the ethical and moral conscience of those who work in terminal care.
In addiion to ethical relecion, it is neces
-sary to see dialogue as a highly efecive tool in the pracice of palliaive care when proposing palliaive sedaion as a resource available to the sick person, given its ability to integrate an act of caring intended
for the whole community. Apropos, Camargo-Borg
-es, Mishima and McNamee 4 understand that we are
relaional beings and that we should invest in this human condiion, establishing intervenions that are more sensiive to relaional aspects, by emphasizing
the similariies and interacions in a sensiizaion pro
-cess geared towards more collaboraive, contextual and responsible communicaion, thereby producing less polarized and hierarchical relaionships.
Although palliaive sedaion is not an unusual procedure in this type of care, its use depends on several factors, which is why its prevalence varies
widely. Several authors, such as Maltoni et al. 5 and
Chiu et al. 6, argue that palliaive sedaion, including
coninuous sedaion unil the ime of death, does
not aim to shorten or prolong life, but to alleviate
sufering. It consists of conduct that leads to a
re-ducion of consciousness, from mild to profound, temporary or permanent, but not deliberately caus-ing the death of subjects afected by disease at an advanced stage, in the inal phase of life and with speciic refractory symptoms7, palliaive sedaion
is highly recommended in the pracice of palliaive care provided by mulidisciplinary teams.
However, the use of palliaive sedaion gen
-erates ethical and interpersonal conlicts in the day-to-day life of the palliaive care team, so that confroning these issues implies the need to make decisions based not only on ethics but also on the axiology, namely, the values of the people involved.
This is what Diego Gracia proposed when draw
-ing up his methodology for “moral deliberaion”8.
We believe that this method is very important in the pracice of palliaive sedaion because, when the sick person’s death is imminent and sufering becomes more acute in all its dimensions, it also
intensiies the anguish experienced by family mem
-bers and other related persons, including mem-bers
of the care team.
In this context, prudent and reasonable deci
-sion-making requires clariicaion and consideraion of the values of the people involved in the process.
That is because several factors, including poor com
-municaion or lack thereof, may create tensions and ethical conlicts. This results in a situaion in which the sick person and their family are not suiciently
informed about the physical and psychological dis
-tress inherent in the inal stage of life, as well as the
resources that can be ofered to minimize them, in
-cluding palliaive sedaion. In the face of sufering and distress, it is necessary to take a responsible and commited decision regarding the process of dying with dignity. Efecively, we need to decide! In this sense, Diego Gracia says:
Problems need to be tackled through a process of de-liberaion. And the intended objecive is not to take decisions that are deiniive or exclusive, but merely prudent. Diferent people can make diferent deci -sions based on the same facts and also be prudent (...). This is perhaps the great challenge ahead of us that will gain more and more importance in the com-ing years: the need to assume a kind of raionality that allows the paricipaion of all those involved in the deliberaion process regarding the pracical prob -lems - in our case, the moral prob-lems. (...) Only then can we contribute to the great challenge for ethics and bioethics: the promoion of “responsibility” 9.
R
e
s
e
a
r
c
h
a
r
t
ic
Therefore, moral deliberaion is the meth
-od to ind a soluion to a problem, by seeking to
overcome the ethical conlict with due care and re
-sponsibility, and considering the decision making as part of this process. This is a dynamic methodology,
which needs, irst of all, to take into account the so
-cio-cultural and historical context of the person with advanced disease and without possibility of a cure,
this also implies an understanding of the family con
-text as a prerequisite to idenify the ethical conlicts and values in quesion.
Elma Zoboli, referring to the method of moral deliberaion in the work of Diego Gracia, sums up the deliberaion process as an iinerary that includes: deliberaion based on facts (presentaion of the case and clariicaion of the facts); deliberaion regarding the values (ideniicaion of the moral issues of the case, indicaion of the fundamental moral problem,
and ideniicaion of conlicing values); delibera
-ion regarding the duies (ideniica-ion of extreme,
intermediate and opimal courses of acion); and de
-liberaion regarding the responsibiliies (submission of the opimal course of acion to prove consistency
regarding ime, promoion and legality) 10.
In light of this problem, this study sought to
understand how health professionals deal with
eth-ical conlicts related to palliaive sedaion, as well as to invesigate whether the discussions and decisions
are carried out and resolved within the mulidisci
-plinary team and include the subject paient and
their family, circumstances that favors the moral de
-liberaion process, according to Gracia 8.
Method
To relect on the deliberaion process, namely, the discussions and decisions regarding the pracice of palliaive sedaion within an oncology palliaive
care team, a descripive exploratory qualitaive study
was developed based on the dialecic hermeneu
-ical method. The research ield was the palliaive care unit of a hospital in southern Brazil.
Paricipants in the study were professionals within the health team: nurses, doctors, nursing
technicians, social workers, psychologists, pharma
-cists, physiotherapists, and nutriionists, totalling 10 paricipants. The survey methodology took place
through interviews with a team of health profes
-sionals with extensive experience in palliaive care. A semi-structured interview was used as the data collecion instrument and adopted the content
of the informaion presented by the research paric
-ipants as saturaion criterion. That is, the repeiion of informaion from one interview consituted an occurring parameter of saturaion
In the process of analysis, the researchers employed a sotware program (Atlas.i® 7.1.5) to organize and analyse qualitaive data, by following
these steps: 1) iniial categorizaion; 2) reorganiza
-ion of the data and a inal analysis, as proposed by
Minayo 11. The analyical process of the reports of
the experiences of the survey paricipants, which
was done based on the guidelines for semi-struc
-tured interviews revealed the primary topic that
is the subject of discussion in this aricle: the deci
-sion-making process.
The ethical aspects of this research – because it involves human beings - was treated according to the rules and guidelines of Resoluion 466/2012 of
the Brazilian Naional Health Council (Conselho Na
-cional de Saúde), which requires the submission of a project evaluaion by an ethics commitee on any
research involving human subjects 12.
Paricipants were informed about the purpose
and procedures of the research, as well as the pos
-sibility to refuse paricipaion at any ime, and were then asked to conirm their consent by signing the free and informed consent form (ICF).
Results and discussion
The interpretaion of the topic, which emerged from the interview data analysis process,
was divided into sub-categories or sub-themes re
-lated to the pracice of palliaive sedaion, namely: understanding of ethical conlicts, process planning, and soluions to ethical conlicts. The sub-themes
are discussed in the light of Diego Gracia’s 8,9 con
-tribuions to bioethics applied in medical pracice
and of other scholars of the subject 10, as well as of
researchers whose works focus on the pracice of
palliaive sedaion in palliaive care 5-7.
To maintain the anonymity of respondents,
the quotes that summarised responses to the prob
-lem have been referred to by code names: Daisy, Violet, Sunlower, Gardenia, Tulip, Hydrangea, Lily, Rosemary.
Understanding ethical conlicts and values
In this analyical subcategory, it became clear
that the decision-making process related to pal
-liaive sedaion is considered complex, with tense moments and situaions within the team and in its
R
e
s
e
a
r
c
h
a
r
t
ic
relaionship with the sick persons and their families, as can be seen in the following account of ethical
conlicts experienced by one of these profession
-als: “The main conlicts were experienced when the
family did not accept sedaion when there was a clear indicaion, for example, a refractory dyspnoea. There was also a family that wanted the paient to be sedated, and the paient did not want to be se -dated. And there were cases in which the team did not reach consensus” (Daisy).
For the healthcare professionals, when refrac
-tory symptoms are present, it indicates the sedaion of the person in distress in the face of imminent death. This is where the issue of involving the family
and the paient emerges, as highlighted in the tesi
-mony of another paricipant: “When the symptoms
are intolerable for paients, ater we have made every possible efort to provide palliaive care and we do not have saisfactory results controlling the paient’s sufering, the possibility of palliaive se -daion is addressed by the staf and then discussed with family members. We consider the family’s acceptance and, where possible, the paient’s. It someimes happens that the paient wanted to be sedated and the family did not want to allow this; we have had situaions like this” (Violet).
In the meanime, conlicts of values between the sick person and the family also start to emerge. Furthermore, it is necessary to understand the “facts”, bearing in mind that the “values” of the professionals also interfere in the process. Between
the healthcare team and the paients and their rela
-ives, the main conlicts reported are associated with
“values, beliefs and culture”: “We acknowledge the values, beliefs and culture of the paient and the fam -ily. Certainly, one cannot help but noice that each paient reacts diferently. Someimes very diferently from what I think, and in a way that clashes with my own values and the team values” (Sunlower).
Indeed, between “facts” and “values”, there is ferile ground for the exercise of decision-making
that takes into account the resoluion of ethical con
-licts and the values involved. In other words, it is an
opportune ield for the exercise of moral delibera
-ion, which, according to Gracia 9, seeks to analyze
the problems in all their complexity. This means as
-sessing the implied principles and values, as well as the circumstances and consequences of the case, allowing the ideniicaion of all, or at least most,
potenial courses of acion, that is, the feasible de
-cisions.
From this perspecive, as reported by one
respondent, “the raionale is as follows: there is a
discussion amongst the mulidisciplinary team. Af -terwards, we have a conversaion with the family
and the paient, within the same imeframe. Howev
-er, we will respect the wishes of the paient, because the paient is our primary concern. It is not uncom -mon that someimes the family asks for the comfort that palliaive sedaion provides, and we really re -spect the autonomy of the paient when they can decide for themselves” (Gardenia).
Planning of the decision-making process
In this subcategory, the focus is on the planning of the deliberaive process and decision-making, with the objecive of considering how the acions are planned and carried out.
It was ideniied that the mulidisciplinary team has been creaing two occasions to discuss the palliaive sedaion cases: a weekly staf meeing, in which they seek to develop mulidisciplinary work, and a family meeing, which is held in line with the needs of the paient and their family. According to
a report from an interviewee, the professionals par
-icipaing in the team meeing include: “the doctor,
nurse, psychologist, nutriionist, pharmacist, social worker, occupaional therapist, nursing technicians from the ward and outpaients care (when their duies allow them to be available) and physiother -apist. Everyone involved in the care of the paient
atend the meeing, and it is an important commit
-ment” (Tulip).
This statement also follows that the
mulidisciplinary meeing is considered an indis
-pensable requirement for the development of mulidisciplinary work that relects the importance
of the discussion process among the team mem
-bers. The mulidisciplinary meeing consitutes a legiimate forum to exercise bioethical relecion, since it is in these meeings that the team ideniies and discusses the values involved in the pracice of
palliaive sedaion, whether they come from the in
-ner circle of support (paient and family) or from the mulidisciplinary team. This is because, according to
Zoboli, intuiive values may be clear to each of us
individually, but we need to share them with others, as these values may difer between individuals13.
To plan and make prudent and responsible de
-cisions, respondents understand that it is necessary to idenify the ethical and value conlicts, including
those within the team: “We try to resolve these in
the team meeing. Of course, we have to remember
that everyone who works here also have their be
-liefs, their own ethics and their own morals; based
R
e
s
e
a
r
c
h
a
r
t
ic
on their home and social environment and their own upbringing” (Daisy). The importance of the values of the professionals involved stands out in this report:
“We all have our beliefs, and the mulidisciplinary team is important to guide this decision. The team provides a foundaion for this decision, this aitude. Without a doubt, my values (my ghosts, my beliefs, my knowledge) are imprinted there.” (Violet).
Resoring to moral deliberaion as a method to reach a reasonable and prudent soluion to the problem, with a focus on the conlicts to be solved, means to align the paries involved to the idea that
the decision to be taken is just part of a dynamic pro
-cess. In this process, it is also necessary to analyze the experiences of people who are in the advanced
stages of an illness with no possibility of healing, to
-gether with the experiences of their families. Only
from this perspecive, can health professionals con
-sider their values and discern them from those of the sick person and their friends and family.
From the reports of the paricipants, it be
-came clear that the deliberaion process is sill
under construcion, given that, in addiion to knowl
-edge and skills, deliberaion implies aitudes, such
as mutual respect, humility or intellectual modesty, and a desire to enrich understanding of the facts by listening to others14. Without doubt, the planning
of acions to be taken involves team discussions and decisions, as conirmed in the following statement:
“I cannot take a complex decision like this by myself. It (team deliberaion) is a very precious resource and so speciic to a single moment, a unique experience”
(Violet). In fact, when considering the importance
of this pracice for all those involved in the deci
-sion-making process regarding palliaive sedaion, it is evident how important shared understanding is, paricularly for the professionals, as can be seen in
the words of one respondent:
“I do not know if it is because, every ime some -thing is not being done in the best way, I quesion it. Then, if we quesion, think about it, and talk to reach a paricular conclusion, I think it is being done in the best possible way. I believe that it would not have been done in the best possible way, if I had let a doubt without quesioning, without answer -ing, without asking why. Therefore, every ime I have doubts regarding the sedaion, I try to listen to the opinion of the doctor and other profession-als, because discussion is necessary. Ater all, I will be dealing closely with the family, and then they will bring these quesions to me and I need to respond calmly” (Hydrangea).
By analyzing the reports, it was found that the planning of the deliberaive process and the professional conduct conducive to making prudent decisions are both factors associated not with only
the professional experience, but also with the expe
-riences related to the pracice of palliaive sedaion:
“I believe there was a great evoluion over the ime I experienced this. Even me, as a professional, wow, I changed a lot! It is a paradigm shit. It changes your life, the way you confront life. Then, I think there was a shit in improving the discussion of palliaive sedaion, because now people have more experi -ence. They have experienced many cases and many situaions, so they have a more holisic perspecive than when we started this process. At irst, it was very diicult, there was no consensus. Someimes the decisions were very one-sided; it was more the doctor’s decision. With ime, the decisions were more well-grounded. I think it is diicult for us to look at ourselves and appreciate this growth, but it happened. Because it is a very diicult issue for eve -ryone, it is a diicult subject to broach. Therefore, I think we grew over ime and I think we always have room for improvement” (Lily).
There is a consensus, among the profession
-als, regarding the high relevance of discussing cases in teams, as well as the priority of idenifying the
values that are imbued in the family and the pa
-ient. Therefore, “the service will adapt to the
increasing professional care surrounding paients”
(Lily) – which means looking beyond the available
facts: “Clinical facts are important, but, in palliaive
care, the person who will say what is important is the individual who is undergoing the experience and their family. Listening makes a diference because it guides the care towards their lives” (Violet).
Respondents believe that it is qualiied listen
-ing that reveals the values of clinical facts. Thus,
the understanding of this aspect by the mulidis
-ciplinary team allows an enriching dialogue that results in more reasonable and prudent decision making, which can be assimilated by all or most of the team members, in order to ensure the success of the endeavour. In this sense, the family meeing - seen as a ime when the muli-professional team joins the family to talk about the healthcare needs
of the paient - is extremely important for the cor
-rect understanding of the values, which, in turn, will
be important in decision making, because, as stat
-ed by Zoboli, clinical ethics begins with the clinical
data, but the inclusion of values in decision-making increases the quality of care15.
R
e
s
e
a
r
c
h
a
r
t
ic
In addiion to professionals, the family meet
-ing is a ime for interacion among a representaive group of the mulidisciplinary team, as shown in the
two accompanying reports: “We asked the social
worker to contact all family members via phone for a meeing at the insituion’s premises. One of the team doctors, the social worker, the nurse and the psychologist paricipated in the meeing.” (Daisy)
“This meeing is atended by the doctor, the psychol-ogist, the social worker, the nurse, and, someimes, by the nutriionist and the occupaional therapist, depending on the moment” (Violet).
According to the needs of each family, the composiion of the team that paricipates in these meeings can vary, and some take part with less or more frequency, depending on the concerns raised
by the families: “Each professional will demysify the
situaion regarding their experise, but families ask quesions. One of the families’ areas of concerns is food. Their worry is the fact that the paient has not been eaing and, when necessary, a family meeing is called to discuss the issue, as well as the beneits and risks of eaing at this stage of the paient’s life. The meeing includes: the nutriionist, the doctor, the nurse, the social worker and the psychologist”
(Hydrangea).
It was found, as can be seen in the follow
-ing report, that the paient does not paricipate in
the family meeing: “Our family meeing includes
the mulidisciplinary team and the family, but the paient does not paricipate” (Gardenia). The com
-municaion with the paient is held at a diferent
ime from the conversaion with the family; so “the
paient does not paricipate in these meeings, only the family” (Hydrangea).
Most likely, the reason for this procedure is due to the daily contact of the sick person with the health team, and the need to shield the paient from the discussions with family, or to the fact that the decision-making has oten been delegated to the family. Generally, this occurs when the sick person presents evidence of refractory symptoms, when
it is common to ind the paient confused and dis
-oriented due to the progression of the disease. In other words, although it is believed that palliaive sedaion should be proposed to the subject during the course of the progression of their disease, while
they are sill able to make decisions, this is not al
-ways possible.
In this case, as the paient cannot express their wishes regarding the process of dying, the sick
person is dependent on the percepions of fam
-ily members and of the professionals in charge of
their everyday care regarding the “signs” of the pa
-ient’s wishes. This becomes clear in the following
statement: “We, in our work, because we apply mul -idisciplinary care, make joint decisions. The team observes signs of distress and seeks to re-establish the paient’s autonomy, or their possible autonomy. When the paient’s autonomy is not present, we seek the family’s opinion. We also try to recover any -thing through which the paient might have given a sign, any clue they might have given before they became unconscious”. (Gardenia).
One of the reasons for the family meeing is
to apprise the maximum number of family mem
-bers about palliaive sedaion, in order to share
the responsibility in making decisions: “We call on
everyone to acknowledge their responsibility, (...) and the psychologist (...) tacfully makes the fam -ily members realise their responsibiliies. So that everyone has an understanding of the process and of their responsibiliies to ensure everything goes smoothly.” (Tulip).
In addiion, there is a concern regarding adequate preparaion for grief. This measure is
jusiied, since without a clear division of respon
-sibiliies in the decision-making process, grieving could end up causing addiional sufering for the
family. Therefore, according to Gracia, it is
irrespon-sible to make a decision while considering only the principles. Our responsibility always extends to the future and therefore it is necessary to consider the consequences as an integral part of moral judg
-ment16. It is in this sense that professionals assert
the importance of the family meeing: “We hold a
meeing where we ask for more family members to be involved. It is not only the family member that is accompanying [the paient} who decides. We ask that the family be called, including those closest to the paient, so that we can sit, talk, and explain the disease from the diagnosis to the prognosis and everything else; to discuss expectaions, to explain what sedaion entails, and only then, a consensus is reached” (Sunlower).
Therefore, an analysis of the interviews showed that for the paient, good communicaion based on a clear understanding of the informaion provided by the health team is essenial for the family, to fulill
their responsibiliies: “If the family does not deal well
with the quesion of sedaion, it will be a family that will have problems in mourning. And they will begin to wonder: ‘Why did I allow it? Why did I not stay? If I had not allowed it, would he/she not have survived more days?’ While the family does not understand the whole quesion of sedaion, they are not ready to
R
e
s
e
a
r
c
h
a
r
t
ic
accept sedaion. So, we work things out. Someimes it is necessary to talk with each family member sepa-rately, to understand why they do not want sedaion, and it is very personal” (Hydrangea).
Close examinaion of the data showed that the work that is being developed by a mulidisciplinary team is concerned with analyzing each situaion to ind a consensual soluion, in other words, a group
of professionals commited to inding the best solu
-ion for every diicult case, in order to improve
the decision-making process and ensure, where possible, that these soluions are reasonable and prudent17. For the professionals, the team discus
-sion, as well as the family involvement, is essenial:
“The decision to sedate is never simple. It is never a simple thing, but it must be taken, so we do every -thing to facilitate it” (Rosemary).
As seen, other problems arise as a result of the
process of dying and the decision regarding pallia
-ive sedaion.
Sought soluions to ethical and values conlicts
By the analysis of the third sub-category,
solu-ions to conlicts, it was found that the soluions to the problems were not present from the start, but - instead – they were sought by team debates. This search is exempliied by the decision to give enteral
feeding to a paient, when the opion was for an “in
-termediate” soluion, seeking respect for the beliefs and values of the family and the principle of
non-maleicence: “Not feeding is one of the issues that
we face. Because, to the family, not eaing, means the death of the paient. For the family, it is very sad to see their loved one unable to eat. So, oten the enteral nutriion is let to a minimum, only to reduce the family anxiety, to make the family at ease. In the explanaions about palliaive sedaion it is explained that the medicaions will be stopped, as they will no longer be necessary, with the reducion of nour -ishment, as paients remain with reduced feeding”
(Hydrangea).
To make deliberaions like this, in a con
-sensual way and without accentuaing conlicts
between family members, it is necessary to iden
-ify what their values are in relaion to food: “We
try to show respect and try to talk, explaining the procedure, what will be best for the paient, while respecing the opinion of the family and the paient. For example, if we explain that the food could be removed and the family says no, we leave it. And I seek, within my experise, to do everything that can make things easier, that can help to make the
pa-ient more relaxed and that can bring relief without causing harm. We value the knowledge of everyone, respecing their opinions and beliefs, and seek to un -derstand “(Tulip).
In order to achieve prudent decision making and to respect the choice of the sick person and their family, the team relies on interpersonal dialogue in imes of discussion, especially in cases where, for some reason, the family and / or the paient do not accept the use of palliaive sedaion. This dialogue is crucial in the deliberaion process, given that
the ulimate goal of a moral life is making prudent decisions. And these do not consist merely of the applicaion of the principles, but in the intenion to conform to the basic tenets of human decency 18.
For the professionals, when the paient does not accept sedaion, “the team remains very anxious
(...) cannot handle the sufering; becomes very dis
-tressed and, once again, we have to talk, as it is not our decision, (...) if this sufering is distressing for us, it is even more so for the family, it is much greater. If it is diicult for me, it is much more diicult for the paient, and [I] respect them above all.” (Hydrangea) Other respondents corroborated this point of view:
“We talked a lot, the team engages in dialogue to share experiences” (Sunlower);
“It’s diicult and complicated to work with the de -cision of not applying palliaive sedaion when the paient has a refractory symptom. In general, the policy that we have among the professionals is that, when the family does not accept it, sedaion is not applied. The autonomy of the paient and the family is respected as a jusiicaion for not performing the palliaive sedaion.”(Daisy);
“We work with the team, recollecing our principles and remembering our respect for autonomy. Then the autonomy should be what the paient decides, rather than what the paient says that sounds like what we would do.” (Gardenia)
It was possible to idenify that mutual respect
permeates the decision-making process in the mul
-idisciplinary team. To Zoboli, moral deliberaion in
clinical pracice requires a dialogue that enables the exchange of facts, emoions, feelings, beliefs, values, and not only informaion about signs, symptoms and test results. Recognising bonds and afecions, and respecing diferences and diversity, in an atmosphere of mutual respect, are essenial to listening 14.
R
e
s
e
a
r
c
h
a
r
t
ic
However, one must consider that each profes
-sional is able to decide according to their experise and their professional competence, so that, in the decision-making process, there is no guarantee that the soluion reached by consensus shall be taken to
efect, because we must not confuse the delibera
-ive process with the ability to decide 10. Therefore,
in teamwork, one must take into account the spe
-ciic competencies of the professions related to the
act of caring: “Most of the ime, it is the atending
physician or atending medical team [who decide]. And this is usually a decision taken ater examinaion of the case, discussion of the case, and it is a deci-sion that, obviously, must be shared.” (Daisy).
The analysis of the reports led to the conclu
-sion that the profes-sionals consider fundamental the idea that, in order for the decision-making to be, efecively, made by the team, it needs to be based on the “arguments” of knowledge of the case, and
not on the “authority” to argue. “Sure, everyone can
[argue]. But the decision will also have to be agreed by all, that’s what happens.” (Lily)
The moral deliberaion proposed by Gracia 8 is
a method that can lead to a major improvement in the “way of thinking” in teams, paricularly when it comes to the mulidisciplinary palliaive care team, in which health professionals, according to their experise, can directly afect, posiively and / or negaively, the paient’s quality of life and hence the quality of the paient’s death. Efects that depend on, among other factors, not only the theoreical basis and technical capability to provide care, but, above all, the moral jusiicaion of ethical systems that serve as ethical support for the work of these
professionals. This means, that this refers to know
-ing whether they consider or not, or even, to what extent they relect about the facts, duies and values involved in the whole process.
Each professional of the team has a good un
-derstanding of the clinical and personal history, that is, the “facts” and “values”, of the paient and their family. However, to facilitate decision-making, this
knowledge should be shared with the team, as re
-ported below by one interviewee:
“You know this paient inimately, the whole family structure, in most cases, the profession of each of them, the inter-personal relaionships. The problems experienced by the family are brought by the social service, the psychologist and also by us, through the daily contact that we share with them. And this be -comes very easy for us to deal with, in the sense that we get to know the family structure and hierarchy.
Consequently, the decisions become less diicult with this perspecive. When you make the decision simply based on isolated facts or speciic symptoms, without the whole story to support it, it becomes more complicated.” (Lily)
Besides favoring the deliberaion process for
prudent and responsible decision-making, shar
-ing informaion helps to promote ethical relecion
as a team. That is why the ethical deliberaion re
-garding health is also a permanent educaional tool
for professionals, through the mutual exchange of experiences and the dialogue on values, beliefs and principles19.
Therefore, when it is stated that, in the ield of research in quesion, you can create a process of moral deliberaion, there is a convicion that this construcion could be improved based on Gracia’s
proposal 8..This proposal suggests that, a collecive
deliberaion about common goals, with the expo -sure of diferent views and their raionale can be,
according to the author, the appropriate method
for the remoralizaion of the professions and the resurgence of professional ethics 17. Certainly, the
same suggesion could be well received by any oth
-er palliaive care s-ervice that has not yet created a deliberaive and decision-making methodology, with the necessary bioethical foundaion. Even for services that already have an established method it
pays to become acquainted with the “moral deliber
-aion” of Diego Gracia 8.
Final consideraions
This study sought to invesigate, through relec
-ion and dialogue with health profess-ionals involved
in palliaive care, in order to understand the delibera
-ion process regarding some ethical conlicts related to palliaive sedaion. It was possible to idenify that the relecions regarding this pracice are done in
muli-professional teams, demonstraing mulidis
-ciplinary work, and that the discussions held with
family members regarding ethical problems and con
-licts occur at diferent imes and separately from
those carried out with the paient. Even so, the re
-search shows that the deliberaion process sill under construcion, regardless of the team decision-making that is made based on the will and values of the
paient, remains an unconsolidated procedure. How
-ever, the healthcare team understands and seeks soluions to ethical and value conlicts related to the
pracice of palliaive sedaion, even though, some
-imes none of the soluions are enirely saisfactory.
R
e
s
e
a
r
c
h
a
r
t
ic
Certain peculiar characterisics were veriied not only regarding the professional culture but also regarding the culture of the users of palliaive care
(paients and family members) - cultures that are ac
-tually the source of the moral values of all involved. According to the analyical framework used, for moral deliberaion and its respecive decision-making process regarding the pracice of palliaive sedaion, a deep knowledge of the clinical facts (the physical and psycho-existenial refractory symptoms), of the
duies and of the values was ideniied as a necessi
-ty for the mulidisciplinary team. In other words, to
reach a prudent and responsible decision, it is neces
-sary that the facts be clariied, that potenial ethical conlicts are weighed within the mulidisciplinary team, and that the values of the paient and their
family are known and respected, as they are respon
-sible for the inal decision. This is the tripod of moral deliberaion for the use (or not) of palliaive sedaion for sick people at the end of their lives.
It is in this sense that bioethics has become one of the conductors of the pracices of health
professionals, paricularly in the context of pallia
-ive care, which, by its nature, rouinely addresses the issues and problems concerning the boundaries
between life and death, while always seeking to re
-spect the sick paient and family values.
Therefore, the decision to use (or not) pallia
-ive sedaion requires extens-ive team discussions ,
in which the role of the paient and of their families
in decision making is respected above all - a condi
-ion considered essenial for the characteriza-ion of this pracice. It should also be noted that, in order to guarantee the right to informaion and respect for the autonomy of the paient, the use of palliaive sedaion should be proposed in advance, that is,
during the progression of the disease, while the sub
-ject’s capacity to make decisions has not yet been compromised.
Thus, the promoion of access to palliaive
sedaion is of paramount importance in comprehen
-sive care at end of life, given its ability to minimize
sufering inherent in the process of dying from can
-cer, and to promote death with dignity. However, concurrent with the disseminaion of this pracice,
it is recommended that palliaive care profession
-als improve their ethical knowledge and axiology and that the grasping of such knowledge by them is encouraged, once the decision-making process is contextualised with the clinical facts, it requires the enire team to apply extensive ethical consideraion and respect for the values involved.
In short, only in the context of the team’s working relaionship, is it possible to redirect the path to be followed in the pracice of palliaive sedaion – a route taken with the consensus of all
involved, with the objecive of prudent and reason
-able decision-making, that is, a moral decision.
This aricle originated from a master’s thesis developed within the Collecive Health Postgraduate Program, at the Federal University of Santa Catarina, Florianópolis / SC, Brazil.
References
1. Minayo MCS. Cuidar do processo de morrer e do luto. [Internet]. Ciênc. saúde coleiva. 2013 [acesso 3 abr 2015];18(9):2484. Disponível:
htp://www.scielo.br/scielo.php?pid=S1413-81232013000900001&script=sci_artext
2. Connor SR, Bermedo MCS. Global atlas of palliaive care at the end of life. [Internet]. London: WPCA; 2014 [acesso 3 abr 2015].
Disponível: htp://www.who.int/nmh/Global_Atlas_of_Palliaive_Care.pdf
3. Berlinguer G. Questões de vida: éica, ciência e saúde. São Paulo: Hucitec; 1993. p. 87. 4. Camargo-Borges C, Mishima S, McNamee S. Da autonomia à responsabilidade relacional:
explorando novas inteligibilidades para as práicas de saúde. [Internet]. Gerais: Revista Interinsitucional de Psicologia. 2008 [acesso 3 abr 2015];1(1):8-19.
Disponível: htp://pubpages.unh.edu/~smcnamee/portuguese/Aritgo_Gerais_RR_2008.pdf 5. Maltoni M, Pitureri C, Scarpi E, Piccinini l, Marini F, Turci P et al. Palliaive sedaion therapy
does not hasten death: results from a prospecive mulicenter study. [Internet]. Ann Oncol. 2009 [acesso 3 abr 2015];20(7):1163-9.
Disponível: htp://annonc.oxfordjournals.org/content/20/7/1163.full.pdf+html
6. Chiu TY, Hu WY, Lue BH, Cheng SY, Chen CY.Sedaion for refractory symptoms of terminal cancer paients in Taiwan. [Internet]. J Pain Symptom Manage. 2001 [acesso 3 abr 2015];21(6):467-72. Disponível: htp://www.jpsmjournal.com/aricle/S0885-3924(01)00286-X/fulltext
7. Rousseau P. Palliaive sedaion in the management of refractory symptoms. [Internet]. J Support Oncol. 2004 [acesso 3 abr 2015];2(2):181-6.
Disponível: htp://www.oncologypracice.com/jso/journal/aricles/0202181.pdf
R
e
s
e
a
r
c
h
a
r
t
ic
8. Gracia D. La deliberación moral: el método de la éica clínica. Med Clín. 2001;117(1):18-23. 9. Gracia D. Pensar a bioéica: metas e desaios. São Paulo: Loyola; 2010. p. 142.
10. Zoboli ELCP. Deliberação: leque de possibilidades para compreender os conlitos de valores na práica clínica da atenção básica [tese]. São Paulo: Universidade de São Paulo; 2010 [acesso 3 abr 2015]. Disponível: htp://www.teses.usp.br/teses/disponiveis/livredocencia/7/tde-22022011-104726 11. Minayo MCS. O desaio do conhecimento. 12ª ed. São Paulo: Hucitec; 2010.
12. Conselho Nacional de Saúde. Resolução CNS nº 466, de 12 de dezembro de 2012. Aprova as diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oicial da União. 2013; Seção 1, p. 59-62.
13. Zoboli ELCP. Bioéica clínica na diversidade: a contribuição da proposta deliberaiva de Diego Gracia. [Internet]. Bioethikos. 2012 [acesso 3 abr 2015];6(1):49-57.
Disponível: htp://www.pucpr.br/arquivosUpload/1237436911409851330.pdf 14. Zoboli ELCP. Op. cit.; 2012. p. 50.
15. Zoboli ELCP. Op. cit.; 2010. p. 53. 16. Gracia D. Op. cit.; 2010. p. 520. 17. Gracia D. Op. cit.; 2010. p. 326. 18. Gracia D. Op. cit.; 2010. p. 263.
19. Nora CRD, Zoboli ELCP, Vieira MM. Deliberação éica em saúde: revisão integraiva da literatura. Rev. bioét. (Impr.). [Internet]. 2015 [acesso 3 abr 2015];23(1):114-23. Disponível: htp://revistabioeica.cfm.org.br/index.php/revista_bioeica/aricle/view/992/1209
Paricipaion of the authors
Melisse Eich is responsible for the concepion, bibliographic research, data collecion, transcripion of the interviews, analysis and interpretaion of the results and wriing of the aricle, under the academic supervision and revision of Marta Inex Machado Verdi. Pedro Paulo Scremin Marins collaborated in the bibliographic research, wriing and formaing of the original text.
Recebido: 30.4.2015 Revisado: 18.8.2015 Aprovado: 24.8.2015
